Reaching out to myself

In an average lifetime, we will take a breath about 588,000,000 times (at rest we breath about 16 times a minute). Obviously breathing is fundamental to life in that it provides oxygen to the body and takes carbon dioxide away. Breathing is also a rhythm of the body we all dance to and which forms a window into the fundamental anatomy and physiology of the body.

Parkinson’s disease is disrupting the conscious control I have over my body (it is as if Parkinson’s has pushed my body ahead of my mind) but it has mercifully left unconscious functions like my breathing intact. Therefore, Parkinson’s has left a gap in which I can assert the feeling of a connection to my body.

I was at yoga today feeling annoyed with my Parkinson’s as I was struggling to get into the poses. I began to ask myself, how can I feel a closer connection to my body no matter how my symptoms fluctuate? I thought of an image of reaching into my body and touching the heart of me; like plunging my hand through a layer of oil to get to the clear water underneath. Then I noticed my breathing; I breathe in, my chest expands, I breathe out, my chest deflates. I focused on this rhythm for a minute or two and then it hit me:

I breathe in, my chest lifts up as if I am reaching out to myself.

I breathe out, my chest contracts as if I am pulling myself closer.

I reach out for myself, I pull myself closer. I reach out for myself, I pull myself closer.

This is a profound realisation. No matter how my symptoms fluctuate or deteriorate I will always be able to reach out to myself and feel a connection through my breathing. And I will be given the opportunity to do this hundreds of millions of times. I can be myself…

Retreat

Imagine Michelangelo’s disappointment if he stood back to admire his David and all the dust and chipped marble that he laboriously removed over months slowly began to reattach to the sculpture. David was gradually becoming covered up and drowned in the discarded marble.

Would Michelangelo give up art if he then saw his Sistine chapel fresco brush stroke by brush stroke go back to an ordinary ceiling?

This is what it feels like to see the gains you have achieved in managing your Parkinson’s symptoms be pushed back. My symptoms have worsened recently and I have retreated from where I was.

But, I won’t give up trying to sculpt or paint my life…

The power of “ahhhhhhh” to diagnose Parkinson’s disease

Currently, there is no diagnostic test for Parkinson’s or an objective measurement of the progression of the disease. These missing pieces of the puzzle are crucial in making it easier to identify those with the disease and it will allow the effectiveness of new medicine to be accurately measured.

Now, imagine if these problems could be tackled and solved in one go. Imagine that the way to do this is through one simple telephone call? This is the exciting prospect currently being developed by Dr Max Little and his team (Parkinson’s Voice Initiative). Parkinson’s disease manifests as a disorder primarily of movement, including rigidity, stiffness and tremor. Evidence suggests that the majority of Parkinson’s sufferers develop rigidity, stiffness and tremor of the vocal cord, thereby effecting speech production. Dr Little has shown that severity and progression of the disease can be traced through the effect on the voice. This has huge potential!

The basis of the test is to record your voice saying “ahhhhhhh" and sophisticated computer analysis is able to differentiate between healthy individuals and Parkinson’s sufferers. In laboratory conditions with good quality recordings the test has an accuracy of 99%. Yes, 99%!

Currently, Dr Little and his team are testing their system on ordinary landlines and mobile networks and the results are pending. If the data shows a comparable accuracy and the confounding factors of taking recordings in the “real world” can be ironed out, this system could be used to test millions of people very cheaply. For example, it is possible that when people reach, say, 55 they could have their voice recorded over the phone to see if they are showing signs of the disease. Intervention could therefore be earlier to preserve motor function and improve quality of life. This could change the process of diagnosing and treating Parkinson’s forever.

If you want to know more or get involved see http://www.parkinsonsvoice.org/

Where does it hurt?

We have the ability to point to where it hurts in our bodies and let others know we are in pain. Such self-awareness is one the wonders of the universe!

Yet, ask me where my Parkinson's hurts and I can't point anywhere. Parkinson's is in me. It surrounds me and confines me; it seems to be everywhere. It's like I'm on stage and the lighting, sound effects and cues that determine the necessary context of the play are controlled by Parkinson's; but we are working from different scripts. Therefore, the things I do and my intentions are mismatched to the plans Parkinson's has.

Where does Parkinson's hurt? My head? My heart? I think it hurts my emotions. Before I was diagnosed I still had Parkinson's but my emotions weren't burdened by the knowledge of the prognosis. Parkinson's hurts now because if feels like I am not in control of the context of my life. Parkinson's is a burden because it impacts me emotionally. 

However, emotions can be healed by thinking. Try it. Look into the current state of your emotions. Think the opposite; do you feel different? You may not believe it (thinking doesn't change the fact I have Parkinson's) but the thing you are doing at this moment, thinking, is incredibly powerful in dealing with any emotional pain. We can change the world through changing our emotional reaction to the world. That is how we can heal the hurt of Parkinson's...

Losing what you never had

There was once a calmness in my body, a stillness I didn’t even realise was there; I saw through it like it was a transparent plastic sheet wrapped around me. That is what Parkinson’s takes away. It rips that sheet from you and exposes you to the awareness of what can be lost only after you have lost it.

Parkinson’s compels you to mourn something you didn’t know you had. You can’t hold it one last time and say goodbye; it’s like your wife divorcing you when you didn’t even realise you were married. Mourning such a loss can feel very strange!

A sense of duty – should I take part in clinical trials?

Recent reports of possible advances in Parkinson’s treatment have brought to mind the importance of clinical trials as a means to scientifically test the benefit and risks of such treatment. Inevitably clinical trials need sufferers to take part, which has posted through my door a big moral dilemma: is my sense of duty towards the Parkinson’s community who will potentially benefit most from new treatments or towards myself as the preserver of my health? I do see that I might benefit from being in the clinical trial (assuming I’m not on the placebo) or from a positive outcome of the trial (assuming there is one) but the main issue for me is the safety of clinical trials.

Potential new treatments are experimental, that’s why they need to go through clinical trials, so therefore they carry a greater risk of the unknown; of course any treatment (but in particular drug treatment) has gone through extensive testing before it is accepted for use in humans. But the unknown risk is a stumbling block for me. I am a scientist you see (I have a DPhil in Genetics) and I simply cannot go into something without looking at the current state of knowledge in the scientific literature. I am lucky in that I have acquired the skills to understand the science and I know (because I’ve done it) that research also deals largely with unknowns. Again, I hear the objection, “if you don’t take part in clinical trials we will never know”.

For me it comes down to this: with the current state of my Parkinson’s being fairly tolerant of periods of good movement I have too much to lose if something went wrong and it is my sense of duty to myself to preserve my health for as long as possible that stops me from signing up. I imagine in the future when the extent of my decline shifts the emphasis to “I’ve got nothing left to lose” it will break down the barriers and I will be game for anything; inject me, probe me, scan me, break me, mend me! But, for now, I don’t want to risk the life I have at the moment; I want to enjoy it while it lasts. Is this selfish? Maybe. Understandable?

On the beach

The sun is strong today! It beats down on me and I feel its oppressive heat; even the sand around me burns. I look towards the cool, refreshing sea and see the person I thought I was going to be floating in its cool embrace, immune to the Parkinson's sun. I try to walk down to the sea but the sand burns my feet. I sit down on my towel again, head in hands. I put some dopamine sun cream on but I know I will burn eventually...

That warm feeling

Out of the array of symptoms on the Parkinson’s buffet table, one of the most distressing is urinary incontinence: yep, that's right, the almost constant feeling of being on the edge of wetting myself, pissing my pants, warming myself on a cold day; the panic of feeling urine escaping from my bladder and dribbling down my penis.

Bladder control has a huge psychological component because it is one of the first bits of our bodies we learn to control as young children; losing control stirs old feelings of uninhibited shame. Because of the vivid connection to early childhood it pushes the thought, "Has my Parkinson’s caused me to regress this much?!" 

This is one of the many indignities of Parkinson's.

O, you will have to excuse me; I've felt another dribble...!

"The touch is sand…"

Lyric by Robert Pollard, musical genius, Guided by Voices

My mind reaches out to my body, across the void and through the fog, to express its foundational purpose; to play the strings of my body to generate the music of functionality and life itself. My mind touches the strings but the hand that reaches out collapses into a pile of sand. I try again but my mind’s influence disintegrates into tiny grains of sand. I look up and see a vast desert surrounding me…

Parkinson's disease: the ham sandwich that wants his cheque

My body orders itself from the menu at the Parkinson's cafe, greedily devours itself and then pays the bill for what it eats.

Parkinson's is the process of my body defeating itself and I'm paying the price. The cause of the disease means, although I am not to blame for the loss of nerve cells, they are my nerve cells I'm losing; something that gives me control of my body is slowly controlling me, which means I can't leave the Parkinson's cafe and I can't stop eating...

Mental to physical and back again

She holds the violin with a graceful lightness that belies the violin's physical presence. The bow moves and her fingers press on the strings and what emerges is an expression of the emotional content of her being. Somehow her mind translates itself into the movement of her hands and arms; the violin, in its response, retains yet transforms the logic of thought into the physical presence of sound. I capture these sounds; and their physicality, in turn, plays the strings of my mind to generate thought. In essence, her mind, via these physical intermediaries, is reaching into my mind and playing it like an instrument.

In contrast, Parkinson's attacks the first step in this process, the "somehow" that translates conscious will into bodily action; its deleterious effect cascades throughout until Parkinson’s plays a song, dissonant in nature, in the other person's head unlike the one I intended. So I reach out but fail to go beyond myself.

From flesh to rigid stone

Parkinson's disease is a snake bite; venom is radiating from the initial wound and is inexplicably seeping into me. Its poison obliterates all it touches; exchanging flesh for rigid, cold stone. Silent pain sets my face in unalterable anguish as the snake wraps its body around mine. It bites again and again; those around me try, in vain, to drag the creature off me. I finally surrender to the stone and there I remain, locked in the perpetual embrace of Parkinson's.

A permanent hair in my mouth

Every day that I wake up with Parkinson’s I find a greasy hair in my mouth; I spend all day pulling it out of my mouth but never come to the end of the hair. The hair dangles from my mouth and when I sit down it accumulates in a big pile beside me or when I walk around it trails behind me…This is the chronic nature of Parkinson’s.

Three colours of Parkinson’s treatment

What is the aim of Parkinson’s treatment? Is it to send you back in time and give you your body back? Will it repaint your Parkinson’s portrait in one go?

Given the current state of Parkinson’s interventions and the nature of the disease I’ve accepted that, unlike diarrhea, taking a tablet will not stop Parkinson’s draining you; a tablet will not wipe you clean. Therefore, looking at treatment as a one stop shop at the tablet shop and then you can move on is an ill-fitted approach to the illness.

A portrait is painted one brush stroke at a time and uses many colours so treatment requires a multi-faceted approach. All painted colours are derived from blue, yellow and red. What are the three colours of Parkinson’s treatment?

BLUE

  Back to basics:

Treatment should be focused on giving a good quality of life to sufferers; which starts not by focusing on the portrait as a whole but breaking it down into its components brush strokes. This means helping get the basics right (movement, showering, dressing, cooking, sleep etc) and therefore providing a solid foundation to build up and provide space for a fulfilling day.

YELLOW

 You are made up of many parts, treat them all:

Parkinson’s affects many functions of the body (e.g. initiating movement, coordination, facial expressions, swallowing, speech, energy levels, sleep, bladder control, mood etc) so a holistic approach will challenge and hopefully improve each aspect of the disease; thereby ensuring all four tires on your car are properly inflated.

RED

 Remember the emotional:

The aim of treatment is to allow sufferers to live alongside Parkinson’s. A fundamental aspect if this is to be achieved is dealing with the emotional impact of Parkinson’s; the disease is a problem only because the symptoms affect us emotionally. In addition, the emotional is the source of strategies and coping with the disease so looking after the emotions of a sufferer and their family and friends is crucial.

INSTRUCTIONS: Mix paints as necessary and apply one brush stroke at a time.

Reflecting Parkinson’s

When you look through a telescope at a distant planet you are experiencing the photons of light bouncing off the planet but not the planet as it is in itself; that is shrouded in mystery. Similarly, when I look at a person I am not experiencing them as they are in themselves but only the light that is reflected off them. In other words, experience is indirect and mediated by physical phenomena (e.g. light, sound waves, stimulation of nerve cells etc) unlike the object being observed (e.g. the human body is not a photon of light). Objects in themselves can never be known because knowing requires a knower with an indirect point of view; to know things in themselves means viewing without taking up a point of view, which is impossible. Objects are always experienced as a reflection of their true nature.

What about when I look at myself and with self-awareness recognise myself? Isn’t that experiencing myself as a thing in itself? The experience of my body is still indirect and mediated by physical phenomena; for example, visual experience of myself is mediated by light. If I close my eyes I still sense my body as a possession of myself, but this is dependent on sensory input from my body; I cannot know myself without such input and the point of view constructed out of it. Therefore, self-awareness is from a specific point of view, only the sensory input is internal and external; we have privileged access to inner sensations but this is from a specific point of view (our own) and never as a thing in itself; viewing must be from a point of view. It follows that we will never fully know ourselves despite our self-awareness.

Parkinson’s is a disease with a physical manifestation that overlays conscious control with stereotypical movements (e.g. tremor, blank facial expression etc). In a sense it distorts the reflection of the person beneath the symptoms to those around them; the photons of light bounce off the person at the wrong angle. The viewer of a Parkinson’s sufferer, including the sufferer herself, has to readjust, filter out the distortion, to see a clearer reflection of the person; they are not just a reflection of the disease.

Losing a sense

I started to notice it when I tasted my food as if through a fog; it was harder to experience, to see, the flavours in my mouth. I then found there was dullness, an absence of sensation, in my nose and I had to reach for the smells I could experience, whereas before smells reached out to me. It seems as if one of the doors through which I access the world is being closed to me; I'm losing my sense of smell. As Kant argues, the means by which we experience the world (e.g. our senses) narrows the totality of the world down to our world; my world has just become narrower still. I'm left with my memory of what things smell like, forever picking at the leftovers of a great banquet.

Of all the things my Parkinson's is doing to me and the strange, baffling, frustrating traffic jams I'm getting caught in, losing my sense of smell is the most unexpected.

Broken music

I start to play my instrument but something isn’t right…the instrument is fine, I’m playing it well and the musical score I’m following is perfectly clear. It is something else that has gone wrong: the music itself is broken; in the space between instrument and listener the sound has become scrambled no matter how well I play.

As my mind plays the music of my conscious will, my body no longer listens or dances to the sound. The space between my mind and body, the means of translating mind into bodily action, the reverberating air itself has become corrupted, thick and heavy because of Parkinson’s.

Parkinson’s medication

The task of life is equivalent to keeping a spinning top turning at the correct speed so it doesn’t fall over; you occasionally have to gently flick it to maintain its momentum and you do this in the plans you make and in your actions.

Parkinson’s makes the spinning top lop-sided so it is more prone to losing momentum and stopping. The flick that would normally work to keep it going isn’t strong enough; your plans and your actions have to succumb to the disease. So, medication is taken to help impart the necessary momentum to keep the spinning top going. However, sometimes the medication has too much of an effect and makes it spin too fast, resulting in unwanted side effects.

I took Levadopa for the first time yesterday; it kept my spinning top turning fairly well and relieved some of my rigidity and slowness of movement. These symptoms feel like I’ve put on clothes three times too small for me; causing the range of possible movement to be curtailed. Medication provides me with baggier clothes to wear. Unfortunately, the Levadopa also gave me overwhelming and irresistible sleepiness.

Keeping that spinning top turning at just the right speed is difficult.

Solve the jigsaw puzzle and you can move!

My body is like a giant jigsaw puzzle with my limbs, organs and other body parts all jumbled up. When I want to move I must painstakingly rearrange the pieces into their correct position; this laborious mental effort completes the circuit between my mind and my body. Once this happens something releases in my body and I can move, like a dog straining at the leach that is suddenly given his freedom.

As I'm moving I can feel myself unraveling and becoming jumbled up again until the circuit is broken. Then I have to start the whole process again. As my symptoms have worsened the jigsaw pieces have become smaller, requiring more time to set in place. It is mentally and physically exhausting. 

Invasion

We had been sailing on the oceans for years, looking for land and somewhere to build a new home. The ship was crowded with passengers and crew hoping for a new start. Then it happened; a thin line of green appeared on the horizon, “Land ahoy!” and everyone rushed to see. We sailed closer and the green line resolved into a vast coastline. All on board cheered with joy and relief!

It was decided to send a small group ashore to set up a camp; I was one of these initial settlers. The land was strange, but full of delicious and abundant fruit and after years on board ship we gorged ourselves. Then we made a clearing in the forest and set up camp. On the second day we met the native people of this land; strangely, they ignored us as if we had never arrived.

Over the next few years we vastly expanded the camp, cutting down more of the forest for housing and fuel, and rapidly moved inland. As we claimed the land as our own we displaced the natives from their homes and devoured the natural resources.

We had established a firm foothold and a thriving community before the natives reacted; but, by then, it was too late, our invasion was inevitable.

And, to think, all this came from one ship; the name of that ship…Parkinson’s.